Whew. Ok, so... I am doing everything I can to keep my sanity (not the word I typically use haha) together right now. I'll do my best to keep the background stuff as short as possible, but I can write novels when I'm stressed out. I apologize in advance lol. But yeah, on the verge of tears at the moment because I'm reading MY story in other people's stories. I'm so exhausted.

I have been trying to find out "what is wrong with me?!" for about 7 years or better. At first, it was "just" some minor low back pain. I've seen half a dozen ortho/neuro type specialists and my primary numerous times (to no avail) over the first 4+ years for JUST that and the progressing symptoms that have come with it in that time. Currently, not including why I'm writing now, I am diagnosed with: meralgia paresthetica (both legs), pudendal neuralgia, and Lumbar Radiculitis. So basically, everything from the waist down is really bad. In the last couple years, I had an SCS installed. I went in for programming several times over the course of 9 months or so, because it would keep adjusting and being less effective, until finally they called in the Engineer from Texas, he worked his magic, and the next time I went in... same result - in essence, the zappies were hitting me in the ribs and making it uncomfortable to breathe. So they had me go in for a 2nd surgery to move the leads. which resulted in the exact same thing, only now it's worse. It's been 5 months.

But the real reason I am here is because, for the past 3+ years, I have been suffering from steadily worsening chronic fatigue. Along with my chronic pains, it's just gotten to the point where I don't even want to get out of bed. I forced myself to make a wellness visit appointment with my primary (insurance vehemently insisted). I dislike seeing her, because it usually ends up being futile anyway. But, for some reason, she actually listened this time and ordered a whole giant panel of bloodwork. 28 tests. Doc told me it would take about 2 weeks and they'd call me, but hopefully nothing bad came of it. I told her, "I don't care if it's bad. At this point, I want an answer. I can't fix it if I don't know what's broken." I went to the phlebotomist the following Monday and he took 10 vials of my blood. I also decided to do an initial search of what all she ordered and then left it alone for a while. Last week, I decided to look into Lupus, because I didn't really know much about it (I've researched a LOT of things because of all the suffering I'm going through, trying to find answers).

I am 95% sure that I have Lupus. There are even symptoms I had no idea were associated with anything, let alone Lupus specifically. I don't have a noticeable red rash on my face, but my skin is definitely flaky ALL the time in that same area, along with what I think is some sort of eczema inside my ears and possibly my scalp. I can scrub the skin off my face and a few hours later it's right back to being flaky again. Joint and muscle pains? Wow. Ok, my joints and muscles almost all over are in pain, most noticeably in my arms and legs, and recently in my neck. I admit that I had been focusing solely on my legs, because they've been the worst off with the low back/nerve stuff, but it reminded me about my knees. I actually had an Ortho tell me that the sharp pain in my right knee (which was why I was there) was torn ACL and had me in surgery 2 weeks later. Except... I woke up from that and was told that my knee had healed itself and he didn't do the surgery, then sent me packing. Healed itself. In 2 weeks. HAHAHAHA. Riiiiight. I am now having that same pain in my LEFT knee, and these sharp pains happen rarely if I sit in same position for too long, and almost always at night, after I've been asleep for a little while. They wake me up and I am instantly crying. No amount of staying still, moving, rubbing, or anything makes it go away. I have to just wait until it decides it's done stabbing me. And, I urinate frequently and have done so for years now. I attributed it to the pudendal neuralgia once I had that diagnosis, but it's been happening for quite a long time. But, if it's "something else" like Lupus, I'm worried that it isn't getting addressed. Then there's the noticeable brain fog, inability to recall words I KNOW I know, going totally blank when I am talking about something because I forgot what I was saying... cognitive dysfunction anyone? Ugh. And don't even get me started on Anhedonia. (I have MDD/anxiety officially).

Aaaanywaaaay, my bloodwork came in this past Monday, I did not get called. I called yesterday morning and got a call back later that afternoon. I was told that my Vitamin D levels were "a little low" and to get an OTC VitD Supplement. Other than that, everything was great. I started crying, because at that point I REALLY wanted them to tell me SOMETHING - a definitive, tangible ANSWER... so that plans could be made, actions could be taken, and I could maybe have a better quality of life, even if it took a while... No such luck. Lady on the phone seemed a bit put off when I asked, "Well then what the he-- is wrong with me?!" She said she'd send the doc a note and call me back with that. It's been 24 hours, not that I expect it to be that quick (it never is), but I've been in a whole fog waiting. I finally went into my patient portal this morning and lo-and-behold, there are my bloodwork results. I don't have a printer, but I saved it as a PDF and tried to take a nap (oh yeah, sleep has been evading me lately).

Sooooo... I think whoever "interpreted" the results is probably wrong, doesn't know what they're looking at, or... I don't know. I don't understand a lot of this, so I've been looking things up and well... here I am in Mayo Connect pouring my life story out because I am desperate for answers, wondering if anyone can READ these results and tell me I'm not crazy. Well... at least not crazy for having Lupus symptoms and being told I am fine.

😐 Again, sorry for the length